How long will the needs last?
Cystic fibrosis Duration Guidance
| Age at date of claim | Award Period |
|---|---|
| 0 – 13 | Award to age 14 (or for 1 year, whichever is the longer) if functional restriction is mild or moderate and needs are identified. |
| 14 - 16 | Award to age 16 (or for 1 year, whichever is the longer) - if functional restriction is mild or moderate and needs are identified. |
| 0 - 16 | Indefinite award – if severe functional restriction is identified. |
Children with cystic fibrosis may develop care needs at any age. Some children with a milder form of cystic fibrosis will remain relatively well on their minimal physiotherapy regimen and pancreatic replacement through childhood. These children will grow and develop well, maintain reasonable school attendance and gradually learn to manage their condition independently. They may or may not have care needs substantially in excess of a normal child. Children in this mild group will, on most occasions be able to manage their treatment by themselves from the age of 14. If needs are present, awards are recommended to age 14 in the mild group.
A proportion of children will show declining lung function and will require longer sessions of physiotherapy twice daily. Children in this moderate group are likely to be on multiple medications including time consuming nebuliser treatments spaced out around their physiotherapy. These children will have care needs in excess whether a parent or carer carries out the physiotherapy for them or they do it for themselves under supervision. Children will be expected to take an active part in their therapy gradually learning to do it for themselves. After age 14, constant supervision during therapy is not required for most children and they could be expected to do it themselves. Some prompting and encouragement may be required and the parent/carer is likely to help more during exacerbations when the child is unwell. Children aged over 14 in general who are physically able will want to manage the majority of their own treatment if they are well enough. The exceptions to this will be children with learning difficulties or diagnosed behavioural disorders. If needs are present, awards are recommended to age 14 in the moderate group.
Other children will deteriorate significantly in the teenage years and become more reliant on their parents due to severe functional restriction. Indefinite awards are recommended in the severe functional restriction group.
A small number of children will be severely affected by cystic fibrosis and develop respiratory failure in childhood. These children are likely to have mobility needs and be severely affected by fatigue, making it impossible for them to carry out all of their treatments for themselves reliably every day. These children have a severe functional restriction and may be terminally ill and/or on the lung transplant list. Indefinite awards are recommended for these children.
